Download Hospice Care Conversation Starters

Dedication
This booklet is dedicated to family members:
Lawrence Good — Brother-in-law, died of cancer in 1987
Martha Neben — Mother, died of Parkinson’s disease in 2007
Tom Priel — Brother-in-law, died of cancer in 2008
And to the many other people throughout the world who have
an end-of-life illness or condition.
Z • Z • Z
A special thank you to my good friend and advisor, Pastor Allen
Anderson, Zion Lutheran Church, Boulder, Colorado, dedicated
to the hospice philosophy and founder of two hospice
organizations.
Resources:
Z • Z • Z
1
Casarett, David J and Quill, Timothy E. “‘I’m Not Ready for Hospice’:
Strategies for Timely and Effective Hospice Discussions.” Annals of
Internal Medicine (March 2007;
Vol. 146, Issue 6; pp. 443-9)
2
Coulson, Wesley J and Ilges, Joseph. “Starting ‘The Hospice
Conversation’.” Hospice Care and Planning (April 2007;
Vol. 1, Issue 4) www.coulsonlawgroup.com
To order booklets, visit: www.hospice-conversations.com
Copyright © 2008 by Gail E. Neben, LLC
Graphic Design: AcaVado Design, LLC • www.acavado.com
Photography: Ted G. Trainor
Hospice Care
Conversation
Starters
A Guide to
Introducing Hospice
by Gail E. Neben
Note from the Author
During
my work with a local hospice
organization, I had the privilege and honor of spending
some time with a woman who was in her last hours. It was
not common for me to attend patients, and it moved me
in a way I never expected. The peace and love exhibited
by this family was a wonderful reflection of the support
hospice care provides to both the family and the patient.
Since that time I have wondered how many more mothers,
fathers, siblings and children could receive that peace
and dignity given by hospice care if they only knew what
hospice care could provide. Then I found out that many
people don’t know because the family is hesitant to bring
it up for several reasons. In order to receive the comfort
and compassion of hospice care, one first has to know the
option is available! By giving people ways to approach
the topic, I hope to bring the message of hospice care
to many more terminally ill family members in my
community and across the country.
All people in every culture deserve peace, comfort,
dignity and honor at end-of-life. It is my personal mission
to give as many people as possible the message that they have the option of hospice care when
confronting a life-limiting illness
or condition.
—Gail E. Neben
A few suggestions
Be
understanding of your family member’s feelings
and reactions. Fear and grief create different emotions
in everyone. One might react with sadness, while another
might show anger. Be patient. It might take more than
one introduction before the Hospice conversation starts
in earnest.
Include as many of the family in the conversation as is
comfortable for your loved one. “Nobody wants to feel
excluded from a discussion that affects them greatly.” 2
Since almost half of hospice patients are cared for by
family members in the comfort of their own home, the
family should be part of the hospice conversation from
the beginning if possible. Some might not agree with
the option, but they will appreciate being a part of the
decision making process.
Do not expect a decision immediately. Some people will
understand that hospice care is the best for them and
their family immediately. However, your loved one might
have questions and want to take some time to think it
over and adjust to the idea. As your loved one progresses
in the illness or condition, the hospice conversation can
be re-introduced.
Be sincere in the intent to give your loved one the best
care possible. Most people are responsive to the intent.
If hospice care is introduced with the intent of giving your
loved one peace and comfort, they are likely to respond.
Introducing hospice care to your loved one could be
one of the most difficult situations you ever encounter.
However, having a quality hospice provider help care for
your loved one will be the most loving act of kindness
you can give.
When your loved one is in denial
‘‘
I am afraid to bring up
hospice because I don’t want
to jeopardize our relationship
at this critical time.
‘‘
Your
loved one might deny their condition as a
way of dealing with it. By denying the illness they do
not have to face the pain of grief. Helping him/her face
his/her feelings will be helping him/her along the way
to a peaceful and loving end-of-life experience. Anger is
temporary, death is not. Example: “Bill, before I start
I just want you to know how much I love you and want
the best for you. We know from the doctors what your
condition means for the future. We need to talk about
your options moving forward openly and honestly. I know
an organization with wonderful people who know how
to help us get started. Would you be open to letting the
(local name) hospice help us get started...?”
Introduction
Introducing
hospice care to a loved
one can bring benefits that are priceless. The presence
of a quality hospice organization can help your family
member die with dignity, honor, comfort, and love.
However, according to the Annals of Internal Medicine,
“...there is widespread agreement among experts in
the field and physicians that more patients could enroll
in hospice and many of those who enroll should do
so sooner.” 1
The barriers to admitting people into hospice care early
in the prognosis are varied. Often, the subject is avoided,
not because the family does not believe in hospice care,
but because the family is too emotional to talk about the
end-of-life prognosis. Sometimes the family will delay
planning for comfort care until the very end when death
is imminent. However, many families state after their
loved one died, that they regretted not requesting
hospice care earlier. They just did not know how to
start the conversation!
Hospice care, through the years, has demonstrated that
the earlier it is introduced, the better the services can
benefit the patient and family. But how does one begin?
What is the best way to start sharing health and emotional
benefits for your loved one in a way that also shares love,
compassion, and dignity?
I hope that this booklet will give family members some
ideas to help them get started. A few examples of early
family situations are given followed by samples of how the
Hospice conversation can be started. If you do not see an
example that fits your situation, please feel free to call
your local hospice experts to get help on how to start.
The scenarios and subject matter introduced in this guide are derived
from published medical journals, accredited hospice resource materials,
my personal experience and that of Pastor Allen Anderson, Zion Lutheran
Church, Missouri Synod and founder of two hospice organizations.
When your loved one says,
your family member has a prognosis
that does not clearly indicate a specific survival time
limit (such as Congestive Heart Failure or Dementia),
the physician will probably find it difficult to predict
exactly when the time is appropriate for hospice referral.
Your loved one might believe they have a longer life
expectancy than they really have and deny that they are
ready for hospice care, possibly reflecting their fear. Since
one of the benefits of hospice care is learning how to talk
about the illness openly and helping your loved one gain
peace of mind, it is better to start the conversation early.
First, establish the known options with your loved one.
Then, in light of the options, recognize and include
hospice care as one of those options, now or in the near
future. It is never too early to introduce the topic of
hospice care with uncertain survival time, even if your
loved one is not yet ready to be admitted for hospice
care, medically or emotionally. Remember, this is only
the first conversation, not a decision. Hospice medical
directors and registered nurses (RNs) are skilled in
making assessments. If your loved one agrees to an early
consultation (usually at no charge), then the RN can
determine, in accordance to Medicare regulations, if and
when your loved one is physically appropriate for hospice
care. Example: “Mom, the doctor says that you have
congestive heart failure. Moving forward, we need to
discuss your options. While some people live many years
with this condition, others decline more quickly.
I want you to have the opportunity to live a full life for
as long and as comfortable as possible. While we treat
your symptoms, there is another organization I would
like to introduce to you which has experts in treating
symptoms and helping people live a full life at home...”
‘‘
My parent (grandparent)
is fiercely independent and
refuses to accept help.
In
‘‘
‘‘
‘‘When
I’m not ready for hospice.
When you say,
many cultures, asking for help is either putting a
burden on someone else or admitting to weakness, and
both options may be unacceptable to your loved one.
Being able to carry one’s own weight in life is a source
of pride and a show of strength. In this instance the
family member is the key to their end-of-life care. When
approaching an elderly family member who prides him/
herself on their self-sufficiency, it is important to respect
the patient’s feelings. Example: “Dad, I am so proud of
the way you have worked for everything you have and
supported us through the years. Now I would like to take
my turn and help you. It breaks my heart to see you
in pain and alone at
this time. I know
an organization
that can help me
be with you and
enable you to
stay here
at home...”
When your loved one says,
‘‘
You
as family or the caregiver, can approach your
loved one with first asking what his/her desires are.
After making certain the desires are clear, hospice can
be introduced as an organization that can help. Some
benefits of the hospice care that you can mention are:
1. Hospice will help your loved one stay at home as
long as possible; 2. The medications required and all
equipment needed to achieve comfort at home can be
delivered to them as needed; 3. Their symptoms and
comfort can be managed with home visits by a team
of caring professionals; 4. The organization can teach
the family how to safely care for the patient 24/7;
5. One of the most important benefits is that the
organization can help the family as much as the patient!
Example: “From what you have just told me, you would
like to stay in your home instead of moving to a nursing
home or hospital for care. You would also like to have us
nearby to help you. Even though living like before is no
longer an option, I can recommend an organization that
can help you remain at home with us. You will be able
to have your family near you...”
‘‘
‘‘
‘‘
I don’t want hospice care, I
just want to be at home and
go back to living like before.
When your loved one says,
My husband will not agree
to strangers in our home.
Some
people who have lived a private life are
not comfortable with outsiders in their home. They might
be distrustful, or they might not want people intruding
on a very private and emotional time in their life. You as
the family member can be reassuring about their feelings
of privacy and still introduce hospice care as though they
are friends who want to help. In this case his concern
for you might override his need for privacy. Example:
“John, I know you prefer not to have other people here
at this time. However, it is getting increasingly difficult
for me to help you out of bed and keep track of your
medications. I know some very nice people who like to
help when people are dying. We both know the doctor has
said your condition will not get better. Would it be ok if
I asked hospice to help
me care for you...?”
When your loved one says,
‘‘
y mom is so despondent,
M
I am afraid that if I introduce
hospice care, she will think I
have given up helping her and
sink into a deep depression.
‘‘
When
your loved one receives a terminal
prognosis, he/she will often start the grieving process
immediately. Even though it is painful, the family must
help them face their situation in order to obtain peace.
A quality and compassionate hospice organization will
help your loved one communicate their fears and anxiety
in an open and loving way. Bring up the topic in a way
that lets your loved one know you love them and you want
to help. Example: “Mom, I talked to the physician today
about your illness. He told me everything about what you
are experiencing and what options are available. I love
you and I want to help you get through this. Can we talk
about getting someone to come into your home to help
us talk about this openly? They can help us deal with
this together...”
‘‘
‘‘
When the grown child says,
I want to seek a cure no
matter what it takes.
When
your loved one considers comfort care
as ‘giving up’, he/she might think seeking a cure is
their only option. The physician will continue curative
treatment as long as possible, but a gentle suggestion in
the light of ‘what if’ can be mentioned early. Consider
hospice care as an option when a cure is not an option.
Introducing the hospice conversation early gives your
loved one time to adjust to the idea. Exploring options
also gives him/her control over their care when the
time is right. Their physician should continue to let the
patient know how the treatment is progressing, then the
patient can re-evaluate the possibility of hospice care
at any time. “People are seldom, if ever, offended by
being given choices.” 2 Example: “Gail, we have discussed
your illness and treatment options with the doctor.
We can begin aggressive treatment for the cancer with
(radiation) if that is what you want. However, I want you
to know that there are other options available that we
can talk about at any time if the treatments no longer
help. Hospice care can help us go through this together.
They are experts in helping people like us. If, during the
treatment you decide to change to comfort care only,
just let me know. It is your choice of how you want
to proceed.”
When your loved one says,
‘‘
y mom is so despondent,
M
I am afraid that if I introduce
hospice care, she will think I
have given up helping her and
sink into a deep depression.
‘‘
When
your loved one receives a terminal
prognosis, he/she will often start the grieving process
immediately. Even though it is painful, the family must
help them face their situation in order to obtain peace.
A quality and compassionate hospice organization will
help your loved one communicate their fears and anxiety
in an open and loving way. Bring up the topic in a way
that lets your loved one know you love them and you want
to help. Example: “Mom, I talked to the physician today
about your illness. He told me everything about what you
are experiencing and what options are available. I love
you and I want to help you get through this. Can we talk
about getting someone to come into your home to help
us talk about this openly? They can help us deal with
this together...”
‘‘
‘‘
When the grown child says,
I want to seek a cure no
matter what it takes.
When
your loved one considers comfort care
as ‘giving up’, he/she might think seeking a cure is
their only option. The physician will continue curative
treatment as long as possible, but a gentle suggestion in
the light of ‘what if’ can be mentioned early. Consider
hospice care as an option when a cure is not an option.
Introducing the hospice conversation early gives your
loved one time to adjust to the idea. Exploring options
also gives him/her control over their care when the
time is right. Their physician should continue to let the
patient know how the treatment is progressing, then the
patient can re-evaluate the possibility of hospice care
at any time. “People are seldom, if ever, offended by
being given choices.” 2 Example: “Gail, we have discussed
your illness and treatment options with the doctor.
We can begin aggressive treatment for the cancer with
(radiation) if that is what you want. However, I want you
to know that there are other options available that we
can talk about at any time if the treatments no longer
help. Hospice care can help us go through this together.
They are experts in helping people like us. If, during the
treatment you decide to change to comfort care only,
just let me know. It is your choice of how you want
to proceed.”
When your loved one says,
‘‘
You
as family or the caregiver, can approach your
loved one with first asking what his/her desires are.
After making certain the desires are clear, hospice can
be introduced as an organization that can help. Some
benefits of the hospice care that you can mention are:
1. Hospice will help your loved one stay at home as
long as possible; 2. The medications required and all
equipment needed to achieve comfort at home can be
delivered to them as needed; 3. Their symptoms and
comfort can be managed with home visits by a team
of caring professionals; 4. The organization can teach
the family how to safely care for the patient 24/7;
5. One of the most important benefits is that the
organization can help the family as much as the patient!
Example: “From what you have just told me, you would
like to stay in your home instead of moving to a nursing
home or hospital for care. You would also like to have us
nearby to help you. Even though living like before is no
longer an option, I can recommend an organization that
can help you remain at home with us. You will be able
to have your family near you...”
‘‘
‘‘
‘‘
I don’t want hospice care, I
just want to be at home and
go back to living like before.
When your loved one says,
My husband will not agree
to strangers in our home.
Some
people who have lived a private life are
not comfortable with outsiders in their home. They might
be distrustful, or they might not want people intruding
on a very private and emotional time in their life. You as
the family member can be reassuring about their feelings
of privacy and still introduce hospice care as though they
are friends who want to help. In this case his concern
for you might override his need for privacy. Example:
“John, I know you prefer not to have other people here
at this time. However, it is getting increasingly difficult
for me to help you out of bed and keep track of your
medications. I know some very nice people who like to
help when people are dying. We both know the doctor has
said your condition will not get better. Would it be ok if
I asked hospice to help
me care for you...?”
When your loved one says,
your family member has a prognosis
that does not clearly indicate a specific survival time
limit (such as Congestive Heart Failure or Dementia),
the physician will probably find it difficult to predict
exactly when the time is appropriate for hospice referral.
Your loved one might believe they have a longer life
expectancy than they really have and deny that they are
ready for hospice care, possibly reflecting their fear. Since
one of the benefits of hospice care is learning how to talk
about the illness openly and helping your loved one gain
peace of mind, it is better to start the conversation early.
First, establish the known options with your loved one.
Then, in light of the options, recognize and include
hospice care as one of those options, now or in the near
future. It is never too early to introduce the topic of
hospice care with uncertain survival time, even if your
loved one is not yet ready to be admitted for hospice
care, medically or emotionally. Remember, this is only
the first conversation, not a decision. Hospice medical
directors and registered nurses (RNs) are skilled in
making assessments. If your loved one agrees to an early
consultation (usually at no charge), then the RN can
determine, in accordance to Medicare regulations, if and
when your loved one is physically appropriate for hospice
care. Example: “Mom, the doctor says that you have
congestive heart failure. Moving forward, we need to
discuss your options. While some people live many years
with this condition, others decline more quickly.
I want you to have the opportunity to live a full life for
as long and as comfortable as possible. While we treat
your symptoms, there is another organization I would
like to introduce to you which has experts in treating
symptoms and helping people live a full life at home...”
‘‘
My parent (grandparent)
is fiercely independent and
refuses to accept help.
In
‘‘
‘‘
‘‘When
I’m not ready for hospice.
When you say,
many cultures, asking for help is either putting a
burden on someone else or admitting to weakness, and
both options may be unacceptable to your loved one.
Being able to carry one’s own weight in life is a source
of pride and a show of strength. In this instance the
family member is the key to their end-of-life care. When
approaching an elderly family member who prides him/
herself on their self-sufficiency, it is important to respect
the patient’s feelings. Example: “Dad, I am so proud of
the way you have worked for everything you have and
supported us through the years. Now I would like to take
my turn and help you. It breaks my heart to see you
in pain and alone at
this time. I know
an organization
that can help me
be with you and
enable you to
stay here
at home...”
When your loved one is in denial
‘‘
I am afraid to bring up
hospice because I don’t want
to jeopardize our relationship
at this critical time.
‘‘
Your
loved one might deny their condition as a
way of dealing with it. By denying the illness they do
not have to face the pain of grief. Helping him/her face
his/her feelings will be helping him/her along the way
to a peaceful and loving end-of-life experience. Anger is
temporary, death is not. Example: “Bill, before I start
I just want you to know how much I love you and want
the best for you. We know from the doctors what your
condition means for the future. We need to talk about
your options moving forward openly and honestly. I know
an organization with wonderful people who know how
to help us get started. Would you be open to letting the
(local name) hospice help us get started...?”
Introduction
Introducing
hospice care to a loved
one can bring benefits that are priceless. The presence
of a quality hospice organization can help your family
member die with dignity, honor, comfort, and love.
However, according to the Annals of Internal Medicine,
“...there is widespread agreement among experts in
the field and physicians that more patients could enroll
in hospice and many of those who enroll should do
so sooner.” 1
The barriers to admitting people into hospice care early
in the prognosis are varied. Often, the subject is avoided,
not because the family does not believe in hospice care,
but because the family is too emotional to talk about the
end-of-life prognosis. Sometimes the family will delay
planning for comfort care until the very end when death
is imminent. However, many families state after their
loved one died, that they regretted not requesting
hospice care earlier. They just did not know how to
start the conversation!
Hospice care, through the years, has demonstrated that
the earlier it is introduced, the better the services can
benefit the patient and family. But how does one begin?
What is the best way to start sharing health and emotional
benefits for your loved one in a way that also shares love,
compassion, and dignity?
I hope that this booklet will give family members some
ideas to help them get started. A few examples of early
family situations are given followed by samples of how the
Hospice conversation can be started. If you do not see an
example that fits your situation, please feel free to call
your local hospice experts to get help on how to start.
The scenarios and subject matter introduced in this guide are derived
from published medical journals, accredited hospice resource materials,
my personal experience and that of Pastor Allen Anderson, Zion Lutheran
Church, Missouri Synod and founder of two hospice organizations.
Note from the Author
During
my work with a local hospice
organization, I had the privilege and honor of spending
some time with a woman who was in her last hours. It was
not common for me to attend patients, and it moved me
in a way I never expected. The peace and love exhibited
by this family was a wonderful reflection of the support
hospice care provides to both the family and the patient.
Since that time I have wondered how many more mothers,
fathers, siblings and children could receive that peace
and dignity given by hospice care if they only knew what
hospice care could provide. Then I found out that many
people don’t know because the family is hesitant to bring
it up for several reasons. In order to receive the comfort
and compassion of hospice care, one first has to know the
option is available! By giving people ways to approach
the topic, I hope to bring the message of hospice care
to many more terminally ill family members in my
community and across the country.
All people in every culture deserve peace, comfort,
dignity and honor at end-of-life. It is my personal mission
to give as many people as possible the message that they have the option of hospice care when
confronting a life-limiting illness
or condition.
—Gail E. Neben
A few suggestions
Be
understanding of your family member’s feelings
and reactions. Fear and grief create different emotions
in everyone. One might react with sadness, while another
might show anger. Be patient. It might take more than
one introduction before the Hospice conversation starts
in earnest.
Include as many of the family in the conversation as is
comfortable for your loved one. “Nobody wants to feel
excluded from a discussion that affects them greatly.” 2
Since almost half of hospice patients are cared for by
family members in the comfort of their own home, the
family should be part of the hospice conversation from
the beginning if possible. Some might not agree with
the option, but they will appreciate being a part of the
decision making process.
Do not expect a decision immediately. Some people will
understand that hospice care is the best for them and
their family immediately. However, your loved one might
have questions and want to take some time to think it
over and adjust to the idea. As your loved one progresses
in the illness or condition, the hospice conversation can
be re-introduced.
Be sincere in the intent to give your loved one the best
care possible. Most people are responsive to the intent.
If hospice care is introduced with the intent of giving your
loved one peace and comfort, they are likely to respond.
Introducing hospice care to your loved one could be
one of the most difficult situations you ever encounter.
However, having a quality hospice provider help care for
your loved one will be the most loving act of kindness
you can give.
Dedication
This booklet is dedicated to family members:
Lawrence Good — Brother-in-law, died of cancer in 1987
Martha Neben — Mother, died of Parkinson’s disease in 2007
Tom Priel — Brother-in-law, died of cancer in 2008
And to the many other people throughout the world who have
an end-of-life illness or condition.
Z • Z • Z
A special thank you to my good friend and advisor, Pastor Allen
Anderson, Zion Lutheran Church, Boulder, Colorado, dedicated
to the hospice philosophy and founder of two hospice
organizations.
Resources:
Z • Z • Z
1
Casarett, David J and Quill, Timothy E. “‘I’m Not Ready for Hospice’:
Strategies for Timely and Effective Hospice Discussions.” Annals of
Internal Medicine (March 2007;
Vol. 146, Issue 6; pp. 443-9)
2
Coulson, Wesley J and Ilges, Joseph. “Starting ‘The Hospice
Conversation’.” Hospice Care and Planning (April 2007;
Vol. 1, Issue 4) www.coulsonlawgroup.com
To order booklets, visit: www.hospice-conversations.com
Copyright © 2008 by Gail E. Neben, LLC
Graphic Design: AcaVado Design, LLC • www.acavado.com
Photography: Ted G. Trainor
Hospice Care
Conversation
Starters
A Guide to
Introducing Hospice
by Gail E. Neben